In This Issue...

STAYING HEALTHY

THROUGHOUT THE YEARSeasonal info! P6

Thank you Mr Monro! A member’s story and tribute

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18

Alcohol & your heart condition How does alcohol affect your heart?

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14

issu

e76

Sprin

g 20

14

Weekend away Come punting in Cambridge

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9

Supporting young people and adults born with a heart condition

GUCH NEWSFORMERLY KNOWN AS THE GROWN UP CONGENITAL HEART PATIENTS’ ASSOCIATION

Singing for health Support, advice & expertise Get the feel good factor and improve your quality of life

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4

Win with us! National Garden vouchers up for grabs

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19

Sadly, we recently said farewell to our wonderful Editor of GUCH News and Volunteer Manager. Many of you will have had the pleasure of meeting Victoria Goldsmith, who has been an incredible member of The Somerville Foundation team for nearly five years.

Managing, supporting and training our loyal group of volunteers, Victoria kept The Somerville Foundation up to date with emerging trends, new opportunities and new ideas around volunteering. Her dedication and compassion for others

and her energy and enthusiasm has had a positive and lasting impact on members, volunteers, staff and trustees alike.

Under her supervision GUCH News has gone from strength to strength to the wonderful publication we now recognise, always managed with a cheerful and supportive attitude. Victoria will be greatly missed. She has been an absolute joy to work with and we all wish her every happiness and success in her new post. A huge, massive, marvellous, thank you for everything Victoria!

Welcome to the Spring 2014

edition of GUCH News.

This issue is packed with

information to help, advice

to soothe, and stories to

inspire.

At the end of 2013 we were sad to lose our lovely

Editor, Victoria Goldsmith, who has moved onto

pastures new. We wish her all the best with her

future challenges and opportunities. Thank you

for everything, Victoria! In the meantime I will be

acting editor, be gentle with me!

In this issue we look at how we can improve our

health through nutrition with a very informative

and seasonal focus from The London Nutritionist

on page 6. We also look at the effects of alcohol

on your heart condition on page 14 and how you

can sing for your health on page 4.

Read inspiring stories from our contributors and

find out about our amazing fundraisers. Among

them, the Falkirk Round Table raised a staggering

£9,000 for The Somerville Foundation by cycling

from Zeebrugge to Paris. An incredible feat!

If you’re a runner, find out how you can raise

money too by grabbing a place to take part in

the Royal Parks Half Marathon in October 2014.

There are 10 places available but be quick, they

are like gold dust! See our advert inside.

We would like to invite you to join us in Cambridge

for our 2014 Weekend Away in August and Leeds

in October for our Annual Conference. Find out

how to attend on page 9.

Most of the articles featured in this, and every

issue, come from direct requests from our

readers or are contributed by our readers. We

listen to suggestions for stories and subjects,

and we are proud to work with our contributors

to deliver content that is in demand. If you want

us to address a particular topic, or if you’d like to

get involved and write for us, please send me an

email or give me a call.

HelenPs: Please note that the next deadline for

content is April 29th. Make sure you’ve sent me

any material before then if you’d like to see it in

print next time!

Editor’s letter

f

www.thesf.org.uk

www.facebook.com/thesomervillefoundation www.twitter.com/_thesf

http://forum.thesf.org.uk

Please visit us online

This year The Somerville Foundation (TSF) will become 20 years old. For most of its life it was of course the Grown Up Congenital Heart Patients Association, having changed its name over the last few years.

We started life in the Heart Hospital, London, where Professor Jane Somerville was based. The organisation has now grown to one which is recognised around the UK as a strong representative for young people and adults born with a heart condition as well as its most important feature, being there with information and support all around the UK.

Through this publication, our website and the events we hold, TSF provides a way for GUCHs all over the UK to have a link to many others. TSF also has a strong voice with the Department of Health, NHS England, NHS Scotland, Wales and Northern Ireland and has seats on a number of committees that are in the process of setting standards for the future and will be monitoring the specialist centres.

We have a great relationship with the medical profession and whilst occasionally, and quite understandably, we have differences of opinion, we are able to put across the views of GUCHs and their needs and are listened to.

For the first ten years of the charity’s existence the Chairman was Prof Jane Somerville, founder and pioneer in so many ways. It was a huge privilege to have been asked by her to take over the role and I have much enjoyed the decade which have followed as Chairman of Trustees. Ten years is a long time, however, an organisation deserves fresh blood and someone who will bring a different perspective and concentration, so I have decided to step down at the next trustee meeting. The trustees have approved the appointment of Rob Nichol to take on the role and I am very glad indeed that the charity is in such safe hands. Rob is a GUCH, a successful businessman and has been a trustee for some time. I know that he will do the job well.

I will remain as a trustee and maintain a portfolio of dealing with the Department of Health, the NHS, and ensuring that the standards and services that are provided for GUCHs in the UK are what is needed.

The one thing I take from my time as Chairman, more than any other, is the feeling when there are a group of GUCHs together. The strength and determination which is in the room is remarkable, a great positive energy where anything is possible. I go to many gatherings of people and none match up to those.

I would like to thank you all for the kindness and support that you have given me and the charity during the past ten years and I am sure you will do likewise for Rob.

Michael Cumper

20 Years OldFarewell Victoria!

2 3

Our recent Unity Lottery promotion was hugely successful. We have jumped from 80 players in November to over 200 per week now, so thank you to everyone who has signed up.

If you want an easy way to raise money for us, play our lottery. You can play for as little as £1 per week and you could be in with a chance of winning £25,000. There is a 1 in 63 chance of winning, much better odds that the National Lottery or Euromillions!

For just £1 per week you will be allocated with a six digit number, which will remain yours for as long as you wish to keep playing. You can purchase more than one number if you wish.

Every Saturday, the lucky winners are selected at random and prize cheques issued and posted directly to you, so there is no need for you to claim. You must be 16 or over to enter. Winners have to match 3, 4 5 or all 6 digits of the winning number in the correct place in the sequence.

Since our lottery started in October 2012, we have had over 90 winners.

Some of whom have won more than once. Why not join them?

It is really easy to play. You can choose to sign up online by direct debit,

credit or debit card on www.thesf.org.uk, download an application form,

or call The Somerville Foundation office on 01473 252007 and we will

post one to you.

Thank you and good luck!

Play our

Adult Congenital Heart Disease edited by Sara Thorne and Paul Clift (one of the Oxford Specialist Handbooks in Cardiology) RRP £39.99

In my lifetime, a patient’s relationship with their doctor has changed considerably, the patient now expecting to have their medical condition explained to them, rather than being kept in the dark and trusting to ‘doctor knows best’. As Francis Bacon wrote in 1597, the modern consensus is that “knowledge is power” and judging by the number of informative publications produced by charities such as The Somerville Foundation and the British Heart Foundation, this certainly applies to adults living with congenital heart disease. Some patients of course don’t want to know the technicalities of their condition and that is their choice. Some are happy with the broad outlines

given in the publications mentioned above, but some others will want to know more.

We’re living in the information age, with vast resources available through the internet at the click of a button. However, the proverb “a little knowledge is a dangerous thing” (nobody knows who came up with that one) was never more applicable than when searching for information on the internet. Some of the health information on the internet is out-of-date, misleading, alarmist, or just plain wrong (there’s a lot of misinformation about heart attacks for example).

So where can you turn to for up-to-date detailed information on heart disease? One source of information is medical textbooks, and there’s a whole series of Oxford Specialist Handbooks in Cardiology, of which this is the most appropriate to the GUCH patient (others in the series include: Echocardiography, Pacemakers and ICDs, and Cardiac catheterisation and coronary intervention).

This is not a book aimed at the patient, but neither is it aimed at specialists in congenital heart disease; instead it is aimed at cardiologists and as the foreword says it “aims to dispel confusion and equip cardiology trainees, general cardiologists and acute medicine physicians with a sound understanding of the principles of the physiology and management of adult congenital heart disease.”

To both the patient and the cardiologist, the language of congenital heart disease can be confusing, so the introduction includes

useful information about nomenclature (often confusing and bewildering even to a cardiologist) and a general guidance on chest x-ray, exercise testing, echocardiography, and MRI. Even for a non-cardiologist, the diagrams are easy to understand.

Following the introductory chapters, there are nine chapters on specific conditions, presented in easy to follow bullet point single sentences.

The book also covers general management issues of adult congenital heart disease with chapters on emergencies, pregnancy and contraception, endocarditis and lifestyle issues (e.g. flying, exercise, diving).

If you find this book in a bookshop, you can flick through it to see if you’d find it useful (don’t be too put off by all the abbreviations – you get used to them) or if shopping online, you can use the ‘look inside’ feature available on many websites. Whilst the RRP is £39.99, it is possible to pick up a new copy for a fraction of that price, and I can heartily recommend it as a source of detailed information for the GUCH patient.

You can purchase this book through Amazon.co.uk. Don’t forget to click on the Amazon logo on our website. Click on ‘Help by fundraising’ on the home page and choose ‘Shop’.

BookReview

Whether or not you are a fan of the Voice, X Factor or Gareth Malone and his workplace choirs, singing has been very much in the media spotlight over the past few years. I also know, from my conversations with The Somerville Foundation members, that a number of you sing regularly, either in choirs, karaoke or enthusiastically in the shower. Wonderfully, there is now plenty of research being done that backs up the positive effects of singing on health and wellbeing.

Group singing can have a certain ‘feel good factor’ with many benefits. It can be joyful and uplifting, plus help distract you from any worries. The breath control and deep breathing from the diaphragm involved are useful in counteracting anxiety. Memorising words, melodies, watching the choir leader, can all help build confidence, memory and concentration levels.

If you attend a regular singing group or choir this can be something to look forward to in the week, offering social support and networking.

In relation to health, there is some evidence that singing may be beneficial for people with chronic respiratory disease by modifying breathing patterns, reducing breathlessness, and improving quality of life. The Royal Brompton and Harefield Hospitals have both been running Singing for Breathing Workshops for patients for a few years now. The Royal Brompton Hospital group is also open to patients with Adult Congenital Heart Disease: Singing for Breathing Workshops, 2pm - 3pm every Monday. If you are interested in going along please first contact Vicki, Annabelle or Jenni 0207 352 8121 ext. 4087 or email arts@rbht.nhs.uk .

Okay, singing might not be everyone’s cup of tea and I can hear cries of ‘but I can’t sing’! But maybe it’s something to consider. “Many people who love singing in a community choir had stories about being told they couldn’t sing - stories that singing, fun and lots of laughter seemed to melt away!”, says Catherine Pestano, UK Ambassador for Singing Hospitals. There are many different types of choir across the country, Choral,

Church, Pop/Rock and Community Choirs. So whatever your singing ability, there might be a choir that would suit you, whether you ‘bray like a donkey’ or are classically trained and know Bach’s Requiem by heart.

To find out what might be local to you contact your local library, adult education service or the Natural Voice Practitioners’ Network (NVPN). This is an organisation for practitioners who share an encouraging approach to voice work. NVPN believes that singing is everyone’s birthright and they are committed to teaching styles that are accepting and inclusive of all, regardless of musical experience and ability. www.naturalvoice.net

Please get in touch if you would like more information on Singing for Health or any

emotional or mental health issue.

Anne Crump, Mental Health Support Workeranne@thesf.org.uk / 020 8240 1165

Singing for health

4 5

We are frequently reminded of the benefits of healthy eating for our hearts. However, none of us would want to be a slave to our diet.

Here Jo Travers of The London Nutritionist provides us with some basic information regarding the different food groups and their effects. Jo also shares some tips for staying healthy throughout the year and for coping with some of the nutritional challenges that may confront us from time to time, so that we can enjoy food with benefits for our health, wellbeing and quality of life.

A Breakdown of the Main Food Groups

Carbohydrates Carbohydrates such as bread, rice and potatoes are the body’s primary source of energy. In general, slow release carbohydrates, contained in whole grain, high fibre foods such as brown rice and granary bread, are best as they keep blood glucose levels nice and even.

Protein Protein includes meat, egg, fish, beans and tofu. It is needed for cell growth and repair and hormone and enzyme production. Animal sources of protein tend to contain all the different types of protein we need. Vegetable sources, whilst good, healthy food choices, tend to have some missing. To get the full range of proteins that your body needs, try to combine beans with grains, for example beans on toast or rice with peas or lentils.

FatFat is in lots of foods and we usually get more than enough in our diets, but not always the right kind. Reducing the amount of saturated

fat in your diet will be beneficial to your heart and overall health. However, fats such as olive and vegetable oil, nuts, seeds and their oils and omega 3 from oily fish, are needed for cell structure and contain fat soluble vitamins. Omega 3 has also been linked to enhanced mood.

Reducing your total fat intake will help to keep blood cholesterol at a healthy level. Generally speaking there is little evidence to suggest that most of us should limit our dietary cholesterol intake. There are specific types of high cholesterol where it is advisable to restrict intake but apart from that it is actually total fat intake rather than cholesterol that affects our blood cholesterol levels.

CalciumCalcium is used in nearly every electrical process in the body. It is essential that we get enough calcium from our diet; otherwise the body will take it from our reserve stores - our bones. The more calcium is taken from the bones, the weaker our bones get, which can lead to osteoporosis, fractures and breaks. Post-menopausal women are most susceptible. The best source of calcium is from dairy products.

Seasonal Nutrition

SummerNow that winter is hopefully behind us, we are looking forward to summer holidays and days out. If you are going somewhere hot, or we enjoy another hot UK summer, try to eat regularly and keep hydrated. You can get the fluid you need from water, other drinks, such as milk and fruit juice, and also from your food – in particular, fruit and vegetables contain a lot of water. Remember the main food groups and try to eat a good variety of foods at each meal.

WinterWinter, when it comes round again, is the time for illnesses such as flu and vomiting bugs such as norovirus; conditions that prevent us from eating and sap our nutritional reserves. If you are underweight or struggle to maintain weight, building up good energy stores from nutrient-dense foods before the winter months set in could help.

Good immunity depends on us getting a range of vitamins, minerals and protein. Particularly beneficial are vitamin C from fruit and vegetables, vitamins A & E from foods with fat, zinc from meat, beans, nuts and seafood and selenium from plant foods. Getting adequate protein will also assist. There is some emerging evidence that probiotics may help too.

How can I help myself?

Foods high in calories but not “bad” for you Such foods might be recommended for those who need to keep weight on. Avocados, nuts, seeds and beans are all high in calories and nutrient-dense.

Foods low in calories but still “good” for you These are good choices for those who are trying achieve or maintain a healthy weight. Fruits and vegetables, lean meat, white fish and eggs all provide essential nutrients without a lot of calories.

How to eat: “Little and often” or three meals a day?It is best to eat about every 3 hours - breakfast, lunch and dinner plus snacks in between. This follows the body’s natural digestive pattern, gives us a steady intake of nutrients and keeps our blood glucose levels nice and even.

Parties, Barbeques and Eating OutFat, sugar and salt are the key unhealthy things to watch for. In moderation there is nothing wrong with a bit of what you fancy. If there are lots of parties, barbeques or meals out on the horizon, try eating something sensible beforehand so that you are less likely to be tempted by unhealthy foods. Try to include plenty of delicious vegetables with your main meal.

Chips or Takeaways – what are the best choices for those days you are just too tired to prepare your own food?One of the healthiest takeaways is a kebab. Try a chicken shish with plenty of salad and some pitta bread. Fish and chips are high in fat and calories, but once in a while is okay. Pizza tends to be quite high

in saturated fats. If going for curry, go for tomato-based sauces rather than the cream ones which are high in saturated fats.

What should we eat or drink if we are ill and when we are recovering; e.g. from colds / flu / stomach bugs / surgery?This really depends on the illness and is quite individual. Generally post-surgery patients are hypermetabolic (the body’s energy production rises) and require additional energy and protein. Always stay hydrated. Your medical team will be able to provide specific advice.

Ways to stay well nourished on a budgetThere are some very cheap foods that are highly nutritious. For example, beans of all kinds contain carbohydrates, some fat, iron and lots of other vitamins and minerals. If eaten with grains such as bread or flour products, rice, couscous etc, beans are a great source of protein. Dried beans are really cheap. Even ready cooked tinned beans are good value but watch out for high salt content in the tinned varieties.

Nutritionand YourHealth By Sarah Barker

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Nutrition and your Heart Condition

Current guidance (May 2012) recommends the following to help keep your heart as healthy as possible:

� Eating at least 5 portions of fruit and vegetables per day.

� The following are examples of a portion: 1 medium apple, 3 celery sticks, ½ a large courgette, 1 leek, 2 broccoli florets, 1 medium banana, 2 small satsumas. Visit www.nhs.uk/5aday for more information

� Eating starchy foods like wholemeal bread, wholegrain pasta, brown rice and potato

� Reducing the amount of fats you eat (e.g. red meat, peanuts, fried food, crisps, chocolate). This can help to improve the amount of “good” or non-harmful cholesterol in your blood

� Using cooking methods that reduce fat such as grilling and steaming

� Drinking less alcohol

� Cutting out fizzy, sugary drinks and drinking water instead

� Eating at least 2 portions of fish a week, one being oily fish (herring, fresh tuna, salmon, sardines, pilchards)

� Reducing your salt intake to no more than 6g a day

ConclusionFood should be seen as a pleasure and something that we can use to boost our overall health, wellbeing and happiness. Learning to make sensible food choices and providing our bodies with all the nutrients they need to function as effectively as possible will help us to enjoy full, active and happy lives. With thanks to Jo Travers.

Further InformationJo Travers is registered with the Health & Care Professions Council with a First Class BSc (Hons) degree in Human Nutrition & Dietetics. She is a spokesperson for the British Dietetic Association. Her experience includes time working in three NHS Trusts and five years in private practice.

Jo offers a range of services and workshops, including a Healthy Heart workshop and an individual diet plan tailored to your particular requirements. Further information and answers to specific questions can be obtained via Jo’s website: www.thelondonnutritionist.co.uk

The Somerville Foundation provides advice on good nutritional choices for those with a heart condition. See our ‘Lifestyle Issues’ and ‘Personal Health Passport’ booklets, both available from The Somerville Foundation website www.thesf.org.uk/help-advice/resources .

The British Heart Foundation offers advice on healthy heating to benefit your heart: www.bhf.org.uk/heart-health/prevention/healthy-eating.aspx

Your GP, specialist and cardiac liaison nurse will be able to provide individual advice and, if appropriate, may be able to arrange referral to a nutritionist.

It is advisable to check with your own medical team that any eating plan that you intend to follow is suitable for you.

Join us in October at our Annual Conference, this year being held in Leeds on Saturday 11th October 2014. Enjoy an informative, interesting, empowering day of presentations around living with a congenital heart condition and managing your health, followed by a sit-down evening meal with us and stay over in the comfortable, stylish hotel.

This event is open to all GUCH patients, and friends and family are welcome too. Places are limited. To register your interest contact Helen on 01473 252007 or email conference@thesf.org.uk.

Feedback from last year’s conference

“Just want to say thank you for the wonderful conference. It was very informative and lovely meeting up with friends I haven’t seen for over 2 years. It was also nice to meet lots of new people, who I will hopefully meet again. Looking forward to the next one.” Karen Hallwood

“I have to say - my eighth conference BEST EVER! Thanks to everyone who made it possible.” Vicki Hendry

“We really enjoyed the conference this year. We thought this was the best conference ever. The venue was great and the speakers amazing. For those of you who have not had the opportunity to attend or might feel shy to attend I would urge you to come to conference next year. I was amazed how many new faces were there this time and whilst it is always wonderful to catch up with old friends it is wonderful to see new faces and make new friends.” Sam Collins.

Annual Conference 2014Saturday 11th October 2014

22-24 AugustFancy punting on the river in Cambridge? Join us in Cambridge for this year’s social weekend on 22-24 August 2014. Cambridge has the edge when it comes to beauty, history and culture. This elegant yet compact city boasts spectacular architecture in the shape of colleges, chapels, churches and courtyards combined with green parks, wide open spaces and the River Cam, which winds through its heart.

The Doubletree by Hilton Cambridge hotel, with picturesque views overlooking the beautiful River Cam, is in a peaceful location just a stroll away from the historic Cambridge city centre. Get active in the hotel’s Living Well health club, unwind in the pool and dine in style with us at the Riverside Brasserie.

We will be staying for two nights and going punting on the Saturday morning. To register your interest and to receive further details, contact Helen on 01473 252007 or email admin@thesf.org.uk.

>>> Weekend Away 2014

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Up until 2006 I was doing pretty well I thought. Actually that’s not true. I never really thought about my condition at all. It was always there, but I never paid attention to it.

In the summer of 2006 while out and about working I went to jump on my motorbike and noticed my heart beating really fast. At first I didn’t pay much attention but after a few minutes I started to get concerned and knocked on the nearest door and asked to use their telephone to call an ambulance.

After what seemed like a lifetime, an ambulance arrived and took me to Winchester hospital. The journey seemed to take forever, and I didn’t think I would make it. After some time in the emergency room, and some fast flushed adenosine I was back to normal, but shaken. It was an episode of supraventricular tachycardia (SVT) and terrifying!

When I got home, I Googled SVT and its effects on someone like myself who had had a “Mustard” procedure, the results jumped out and terrified me. But, trying to stay strong I closed it and carried on with my life.

2007 was business as usual work-wise, with a few more blue light runs due to SVT during the year. I went to see an arrhythmia specialist but I wasn’t filled with confidence and so left confused. This confusion however dissipated shortly after being back in my usual routine. I read up on triggers for arrhythmia, particularly nodal arrhythmia and after cutting alcohol and caffeine from my life, found that the SVT became very rare.

After being made redundant in 2008 I considered my options, starting with moving to France for a year and working in a bar. It was great fun and I never really gave my heart a thought until the job became too tough; lugging kegs of beer around became hard work and I was suffering from panic attacks and anxiety. As to whether this was in my head, or my heart, I didn’t know but it certainly felt very real!

We returned to the UK in 2009 and I decided I should get myself seen by a specialist. I attended the appointment, my first in 10 years with a great cardiologist, who was my age and super intelligent. I had the usual ECG, ECHO and a chat. The conclusion was that my heart was doing well, but my mind wasn’t. And she was right, I wasn’t happy – I was

scared, and felt alone and unsure about the future – a fear of dying was the underlying thought.

Over the next three years I worked ultimately for myself, filling and delivering training courses. It was enjoyable and I built up a strong reputation as a public speaker but it wasn’t inspiring. However, in 2011 an event changed everything when my father died suddenly of a heart attack, at age 62. He was fit, apparently healthy and living in the south of France – something didn’t add up to me. I had to do a lot to help my family but once the dust had settled, I started to research coronary disease and other diseases typically experienced either as a direct or indirect consequence of the more sedentary, less carefully considered lifestyles and diets that are becoming increasingly common in the 21st century. The research was staggering and I spent every waking hour learning about the mechanisms involved, and it made perfect sense to me. I’d always carefully followed nutritional science as it fascinated me but this research, into why healthy people die, showed that they’re not actually healthy.

I built up a small library of books, studies,

papers and videos on the topic and, as the knowledge became addictive, gained a qualification through distance learning at Cornell University in Nutrition to add to my other studies in nutritional science.

The more I learnt about acquired heart disease, the more curious I was about my condition.

The time was right for me to see if I could now find others who had my congenital condition. I literally sat one night at 3am, and nervously searched the internet for my condition. I found a GUCH forum, with people posting, it seemed pretty old in design, very similar to the old newsgroups I had used years back for finding computer game cheats! I found a post by someone who had also had the Mustard procedure and appeared to be older than me, and doing well.

Like easing my toe in the water of a swimming pool I just couldn’t bear the suspense and went for it and posted in the forum. It was hard for me to do, which is totally out of character as I post on loads of forums, but this was different.

I received a reply to my message with a link to a group on Facebook. I clicked through to the group and it had 200 people in it; 200 people who shared my condition. Reading the posts was so powerful – I could relate to everything with perfect resonance. All these other people had also thought they were alone at some point.

Here it was, my condition, in real time – web 2.0. It was incredible. The ultimate support group.

There was a complete spectrum of people, from their early 20s to their 50s in all sorts of health, doing all sorts of jobs, over the world. I had an awful lot of catching up to do.

Soon, I’d found people in the group that I really gelled with, we were even all sending each other Christmas cards in the post. Finally physical evidence I was not the only one!

I aided the Christmas card effort by creating a web form, and for the first time in my life, set to research and learn everything I could; first about my condition and then about all the other holes, defects and so on that congenital heart disease presents.

The internet provided most of the information and I subscribed to medical journal sites to read the full papers and spent hour after hour learning the terminology - it’s amazing how you can absorb so much information when you are truly passionate about something.

In comparison my work was boring, so I started a new telemarketing business and ended up employing 11 people, but had little focus and was uninspired. In the end I walked away from the stresses so I could focus on building something amazing. I don’t think I would have had the strength to overcome the inertia to do this without the help of Brad Burton, the owner of a national networking organisation, 4Networking. This gave me a platform to deliver short talks to local businesses on the relationship between diet and disease. Each time I delivered my talks, I was getting standing ovations. I was on to something.

My learning, the focus of control had shifted to me, I was in control of my cardiovascular system, my cholesterol had dropped 46% and I’d lost 7kg, through nothing but dietary change alone. My cardiologist and GP were

very pleased – and quite surprised!

I then met with other people with my condition and set to cataloguing us all on an interactive map – it all had such great purpose. I was spending most evenings adding links to blogs and websites to help people find the group as from raw estimation, only 1-2% of our total population had found each other.

The culmination of my efforts came together at The Somerville Foundation annual conference in London in October 2013, where I had been heavily involved in the logistics of bringing international visitors over to the conference.

There were 10 people with my condition together, and that, as far as we know – is a world first.

Going forward, I will pursue my speaking on diet, take it full time as public health education, chiefly in the form of a community interest company, Intelligent Eating, and get very involved with fundraising for The Somerville Foundation – an organisation irrefutably worth fighting for.

I intend on being a game changer, to win some and lose none.

I’ve gone from having an unhealthy unsustainable fear of dying to a joy of living, which is sustainable.

Knowledge is Power

10 survivors of Mustard’s operation for complete transposition

Adam Stevens

The more I learnt about acquired

heart disease, the more I was curious

about my condition

Chat room is open!Join us every Sunday evening 7-9pm for a chat! Go to forum.thesf.org.uk to login and take part.

The chat room is available to all registered users of The Somerville Foundation Community Forum, so join up to join in!

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By Joanne Embleton

Some time ago that was me the little girl with CHD

But, oh no, don’t despair life was not so bad you’ll see, in fact:

IT WAS NORMAL FOR ME

Trips to the docs take off your socks, fingers and toes we need to see

BUT THAT WAS NORMAL FOR ME

Off to the hospital, on our way, yay no school today

Down the road to the 73

THAT WAS NORMAL FOR ME

Prodded and poked that cold x-ray, hold your breath they would say

BUT THAT WAS NORMAL FOR ME

Must test, blood tests, ECGs, funny jelly on my belly wipe it off with something smelly

THAT WAS NORMAL FOR ME

Then one day the doc did say major op this will be, so pack a bag with your new nightie knickers and slippers.

YES THAT WAS NORMAL FOR ME

Hello Mrs what’s her name, age, DOB, (oh I’ll just put C of E) how I wish they would go away there’s a great big room for me to play

THAT WAS NORMAL FOR ME

Nil by mouth above my head, sorry darling mummy said, a pre-med needle in my leg then on a trolley that was like a bed

BUT THAT WAS NORMAL FOR ME

When I wake my folks are there, wires and tubes its intensive care but please believe me when I say I’m very brave there is no fear so mummy and daddy wipe away your tear

THIS IS OH SO NORMAL FOR ME.

Hello everyone,

My name is Nadine McGaffin and I have recently been appointed as The Somerville Foundation Northern Ireland Development Worker.

I was interested in taking on this role for one simple reason: I am a GUCH patient myself. I am 25 years of age and was born with a hypoplastic right heart, with transposition of the great vessels.

I had surgery when I was six days old and again at four years of age, but since then my condition

has been managed by regular check-ups, observations and medication. I, like many other GUCH patients, live every day to the full as best as I can. In July, I graduated with a 2:2 in English and Theology and since then I have been working full-time as an administrator in a distribution company.

In my spare time I enjoy volunteering as a youth worker in the evenings and love to socialise with my friends. In fact, my mum would say I am never at home!!

I am very excited about taking on this role and look forward to seeing the work of The Somerville Foundation grow. I am looking forward to bringing my personal experience as a GUCH patient to my new role. I hope that the insight I have, into what I would like as a patient, will help me to develop the work of The Somerville Foundation and provide resources and support to GUCH Patients in Northern Ireland.

I also hope that my previous experience of volunteering within a charity and my continued involvement in organising events will help me meet the needs of GUCH patients in Northern Ireland.

Introducing...

As the new development worker for Northern Ireland, I have the pleasure of introducing the excellent Adult Congenital Cardiac team that we have based in the Royal Victoria Hospital, Belfast.

In Northern Ireland it is estimated that there are over 4,000 patients over the age of 14 years old living with Congenital Heart Disease (CHD).

The service for adult CHD patients was overseen by the paediatric consultants, through outpatient clinics and inpatient stays until the appointment of a specific clinical lead in August 2011. Since then the Adult Congenital service in Northern Ireland has been managed by the clinical lead and the team around him.

All adult congenital cardiac services are centralised in the Royal Victoria Hospital in Belfast, the teaching hospital for Queens University Belfast. The centralising of all services in the one location allows all patients to access any particular service in a quick and easy manner and also provides the ability for different services to work together in an effective and beneficial manner for the patient.

In a year the team will see around 500 outpatients and can have up to 300 inpatients for interventional procedures, surgery and general admissions.

So who are the team in Belfast?Clinical Lead - Dr Chris Lockhart Interventionist Cardiologist - Dr Mark Spence Interventionist Cardiologist training in ACHD - Dr Colum Owens Adult Congenital Heart Disease (ACHD) Clinical Nurse Specialist - Jan Gordon

What services do we provide in Belfast?

Specialised Outpatient Clinics

Clinics take place on a number of days each week. These clinics allow patients to have the relevant tests needed and receive the outcome through meeting with the clinical lead and specialist nurse at the same appointment.

Specialist Imaging Centre

There is a specialist imaging centre used for further investigations with ACHD patients through specialist echo cardiographs, CT (Computerised Tomography) Scans and MRI (Magnetic Resonance Imaging) access.

Congenital cardiology interventional procedures

Patients can access the excellent facilities for invasive and non-invasive procedures. The team undertake diagnostic catheterisations, as well as invasive procedures such as ASD (Atrial Septal Defect) device closure, complex stenting (a splint put inside a blood vessel), and DC Cardioversion (an electrical treatment used to correct some

types of abnormal heart rhythms).

Acute coronary care beds

There are a number of beds specifically allocated for the use of ACHD patients and through the clinical lead and nurse specialist there is direct admission to these beds for patients who need to be admitted as inpatients.

Congenital cardiac surgery

All congenital adult surgery in Northern Ireland takes place in the Royal Victoria Hospital Belfast. We also have strong surgical links with different specialist cardiac centres in the UK such as Birmingham and Newcastle.

Pulmonary Hypertension Service

ACHD patients in Northern Ireland who have pulmonary hypertension (high blood pressure in the arteries supplying the lungs) will be managed and monitored by the team in the Royal Victoria Hospital Belfast.

Cardiac Obstetric service

This is a service that is offered in the Royal Victoria Hospital alongside the Royal Jubilee Maternity Hospital which is centralised and on site. We also provide pre-pregnancy counselling and monitor women closely through pregnancy, until the birth and beyond.

Clinical Psychologist service

This service is also centralised in the Royal Victoria Hospital site, and is easy to access for those with ACHD, with a psychologist in the department of psychology appointed to work with ACHD patients.

Transitional Period

At the site of the Royal Victoria is also the Children’s Hospital in Northern Ireland where the care of children with CHD is centralised. Each year in Northern Ireland 150-180 young people go through the transition service. This has allowed for transition to take place at ease for the patients at the age of 14 years. It is hoped that in the future transition clinics will develop and take the form of the paediatric and adult team meeting together with the patients to handover the care.

Contacting the teamACHD Clinical nurse specialist - Jan Gordon Tel: 07775 598258

Email: jan.gordon@belfasttrust.hscni.net

I am reminded how fortunate we are in Northern Ireland to have such a hardworking and dedicated team of highly skilled professionals who go to great lengths to look after their patients in their care. As the population of adults with CHD increases in Northern Ireland, I have no doubt that services and quality of the care will continue to grow to meet the needs of the patients.

ADULT CONGENITAL HEART SERVICES AT THE ROYAL VICTORIA HOSPITAL BELFAST By Nadine McGaffin

Northern Ireland Development Worker, The Somerville Foundation

A Poem

A huge thank you to everyone who fundraised for The Somerville Foundation last year: All the runners who took part in the Royal Parks Half Marathon in October (see p17); The Falkirk Round Table (see p17); Belinda Dawson; Peterhead Academy; Kevin Mashford; Graham Ellis; Kenneth Hamill and family; Mick Krolick; Sophie Haggett & Delyth Williams; Helen Weller; Craig Smart and his team at the Royal Bank of Scotland; Valerie Kelland; Val Monk; Elinor Hurford; David Haynes; Katerina Stewart; Greg Tarr; Saracens House; and everyone else who raised money for us or used our Amazon.co.uk and Easyfundraising.org.uk shopping links or bought cards from our online card shop.

Your support is truly appreciated and needed.

To everyone who is planning to fundraise for The Somerville Foundation this year, a big thank you too.

Karl Pinches will be cycling from Wolverhampton to Schull, Ireland and Joanne Dann will be running the 2014 Brighton Marathon. Thank you and good luck to you both.

If you or anyone you know would like to run for charity, we are delighted to be able to offer 10 places for this year’s Royal Parks Half Marathon, to be held on Sunday 12th October 2014. See p17 for more details.

Whatever you choose to do, just remember, fundraising should be FUN!

Thank You!

12 13

This article is intended to provide information to all GUCH patients to describe the effects of alcohol on your heart, as well as the rest of your body, whether or not you take medication for your condition. Also highlighted are key cardiac medications that are affected by alcohol and what this could mean for your health. In no way is this aimed at stopping all who read it from drinking; this article is purely intended to show why people with heart defects and disorders should be careful when choosing to drink so that they can make a more informed decision.

Alcohol and the healthcare system - overview

We have all heard and seen the numerous television, radio and billboard adverts telling us as a nation to drink responsibly and to be aware of our limits. I’m sure we all know that alcohol is bad for us, causing an increased risk of coronary heart disease, strokes, bleeding disorders, multi-organ failure and death. However, many of us still drink, and some of us will drink to excess. Alcohol is now a part of our social and cultural norm. If we believe that it helps us relax after a hard day’s work, then why shouldn’t people with congenital and acquired heart defects enjoy a social activity that others without heart conditions do?

A report published last year by the UK

Government found that there were 1.2 million alcohol related hospital admissions, and the true number of people using healthcare services for an alcohol related problem is most likely higher if ambulance call outs and ‘drunk tank’ admissions are included. In the same report it was estimated that alcohol-related harm and treatment cost the NHS £21 billion in one year alone, which is more than the estimated yearly cost of diagnosis and treatments for UK cancers, obesity and smoking put together! These statistics are staggering. If there was a reduction in the number of people treated, then not only would there be huge benefits to their heart health, but the money saved could be focused on researching and funding new drugs and treatments for all of our heart defects.

What are the risks of drinking?Alcohol travels from the oesophagus (‘food pipe’) into the stomach, where it then travels to the small intestine and is absorbed into the blood. As the blood-alcohol concentration increases, your response to various stimuli decreases. The alcohol is metabolised by the liver, which means the liver tries to make it ‘safe’ and prepare it for excretion (urine, breath, sweat etc). By means of a ‘flushing out’ effect from the body, this alcohol is excreted along with water and other substances that we need to keep healthy. Many of us GUCH patients will have regular blood tests to check on the levels of these substances, such as sodium, potassium and magnesium. One of the dangers to anyone of drinking alcohol

is that too much of these substances will be flushed out of our system, which leaves us at risk of cardiac arrhythmias, seizures and death. Alcohol is a central nervous system suppressant and so as the blood-alcohol concentration raises it affects your body’s ability to act normally and interrupts co-ordination and sensory-motor function.

This will continue on to disorientation, dizziness, vomiting, cardiac arrhythmias and dangerously low body temperatures. Long term, frequent ingestion of alcohol will lead to liver and kidney failure due to the stress imposed on them to metabolise and excrete the alcohol. The liver may also become cirrhosed (scarred and enlarged) due to failure, as it metabolises 95% of the ingested alcohol. The stomach typically suffers from ulcers and inflammation and the oesophagus (‘food pipe’) may show signs of Oesophageal Varices (enlarged veins in the oesophagus itself) which will start to bleed uncontrollably, needing emergency medical attention. Both of these are due to the irritant nature of alcohol and from any alcohol induced vomiting.

Are any of these risks increased in GUCH patients?

There are certain risks which are increased for GUCH patients, namely medicine interaction and when symptoms may be exaggerated by the effects of alcohol. Using information available from the British Heart Foundation,

Type of medication Examples of medication name Drug-alcohol reaction symptomsACE Inhibitors Ramipril, Enalapril, Lisinopril, Perindopril,

Captopril � Sudden and significant drop in blood pressure

� Arrhythmias due to alteration in potassium levels

� Exacerbate any potential existing kidney damage, or damage caused by the medication itself

Anti-Arrhythmia Medication Amiodarone, Dronedarone, Flecainide � Can make medication ineffective causing Atrial Fibrillation

Anticoagulants Warfarin, Heparin, Marevan � Blood already thinned by medication becomes thinner due to effect from alcohol – exacerbates risk of bleeding

Antiplatelets Aspirin, Clopidogrel, Dipyridamole, Prasugrel � Stomach ulcers

� Colitis (inflammation of the intestines)

� Internal bleeding

� Vomiting

Beta-blockers Bisoprolol, Metoprolol, Atenolol, Propranolol � Effects of the medication to slow your heart rate may be exacerbated by alcohol leading to a very low heart rate

� Sudden drop in your blood pressure

� Feeling faint and dizzy

Calcium Channel blockers Diltiazem, Verapamil, Amlodipine, Nifedipine � Effects of the medication to widen and relax the muscle cells of your arteries may be exacerbated causing sudden drop in blood pressure

� Feeling faint and dizzy

Diuretics Amiloride, Bumetanide, Furosemide � Effects of the medication to stimulate kidneys to excrete waste water may be exacerbated causing elimination of too much sodium, potassium and magnesium. This can lead to arrhythmias and seizures

� Increased risk of dehydration

� Fainting, dizziness

Alcohol & your heart

the British National Formulary and the NHS website, I have compiled a list of medications, which GUCH patients may be prescribed, which interact with alcohol. This list is not exhaustive and further information regarding

your medication should be sought from your GP, Cardiac Liaison Nurse Team or local Pharmacist.

It is important to remember that it is a risk

that the ‘flushing out’ effect of alcohol can cause arrhythmias such as Atrial Fibrillation even if you have never had any rhythm disturbances and are not taking any anti-arrhythmia medications.

By Victoria Brown

14 15

Men3-4 units per day

� 1 ½ Pints of 4% ABV beer

� 1 ½ Pints of 4.5% ABV cider

� 250ml of 13% ABV wine

� 3 or 4 25ml measures of 40% ABV spirits

� 3 bottles (275ml) of 4% ABV alcopop

Women2-3 units per day

� 1 Pint of 4% ABV beer

� 1 Pint of 4.5% ABV cider

� 175ml of 13% ABV wine

� 2 or 3 25ml measures of 40% ABV spirits

� 2 bottles (275ml) of 4% ABV alcopop

Isn’t red wine meant to be good for your heart?

There has been a lot of research into the ‘cardio-protective’ effects of red wine on the heart and the consumption of one 250ml glass of red wine each night has shown to only be beneficial to men over the age of 45. This is thought to be due to two actions of ingredients called Flavonoids. These flavonoids increase ‘good’ cholesterol called HDLs in the blood and these reduce fatty deposits in arteries. Another benefit is the reduction of blood clots as alcohol thins the blood. However, this effect must be very carefully weighed against any medication you are on and the amount you drink. It is

important to note that the NHS UK website states it is dangerous to binge drink whilst taking Warfarin, and any person who is taking Warfarin and has existing liver damage should not drink any alcohol at all.

That said, it is your choice

This article is not intended to make you think you are not allowed to have any social enjoyment. Alcohol is a large part of many people’s social life and relaxation time. It goes without saying if you have no desire to drink then don’t feel pressured. If you have been told that you cannot drink by your Doctor or Specialist Nurse then you should follow that advice. However, if you do drink, hopefully

you now feel a little more aware of the risks. I can only advise you to drink responsibly and keep yourself safe. For example, if you are planning on a big social event you could have water in between each alcoholic drink to help keep your blood-alcohol concentration down. However, if you have no intention of drinking anything non-alcoholic, please let the people you are with know about your heart condition and what medications you are taking just in case you start to feel unwell.

Victoria Brown is a Paediatric Nursing Sister at Royal Manchester Children’s Hospital.

She is a GUCH and has recently undergone an Aortic Valve Replacement and Repair of

Mitral Valve.

Can you really enjoy alcohol sensibly?

With all I’ve written, you might be thinking ‘no!’

The information I’ve given is not intended to be over-graphic or scary; it’s given to you as adults to assist you in making mature and informed decisions about your health and lifestyle.

The recommended UK Government guidelines state that men can drink between 3-4 units of alcohol per day, and women can have 2-3 units per day. One unit of alcohol is equivalent to 10mls of pure alcohol so different measurements of different drinks alter the value of units it contains. It is not safe to ‘save up’ units of alcohol during the week and consume them all in one go at the weekend. This is called binge drinking. Alcohol

also affects women differently due to the lower volume of water in their bodies than men’s. This means that women are at risk of having higher blood-alcohol concentration levels than men. Here are some examples of what is within the government guidelines of safe drinking each day.

For eight members of Falkirk Round Table, cycling 264 miles from Zeebrugge to Paris in aid of The Somerville Foundation was the highlight of 2013. Training was hard, but fun, creating a good team spirit. We are delighted to report that we have raised an incredible £9000. The organisers, Prentice Events, planned a challenging cycle but also organised enjoyable activities to fill in the times when we weren’t cycling.

Fortunately the cycling conditions were perfect, and along with another 31 cyclists we experienced a fantastic five days. The trip was packed with incidents, and between the eight of us we were involved in two crashes, resulting in one replacement tyre, one tyre blowout, at least three punctures and a new iPhone screen. We certainly kept the support team busy!

Initial highlights of the trip included a civic reception and police escort into Lille on the first day, and a tour of the local Le Clerc Brewery in Peronne where our second day’s cycling was rewarded with one or two beers. Life as a Round Table member can be hard sometimes!

Day three was supposed to be a rest day and we enjoyed a cycle tour round the Battlefields courtesy of the Peronne Cycle Club, visiting the war memorials from Word War One. Peronne Cycle Club invited us to a ceilidh that evening where they laid on a pipe band, dancing and

food. We supplied Scotland’s very own Barr’s Irn Bru and Tunnochs caramel logs! We finished the night by brushing off our dancing shoes and organised an Orcadian ‘Strip the Willow’, and some community singing with our French hosts enjoying that old Scottish classic “You Cannae Shove Your Granny off the Bus!”

Day four was the day we had all been waiting for. Not because our destination was the town of Compeigne but because we eagerly waited to see who would be crowned “King of the Hill”. We thought we had the favourites in our team, however a 16 year old cycling enthusiast on the trip with his dad won the title by a country mile! Sometimes Round Table members just have to accept they are getting older!

Our final day started ominously with the appropriately named Hill of Doom climb and cycle into Paris. The day was not without incident - jammed chains, torn rear tyres and head long dives over handle bars. Despite these mishaps we soon got back under way, and, with a police escort, arrived at our destination, the Petite Palace, where the Tour de France finishes. Not content with this, 12 of us took our lives in our hands and cycled along the Champs Elysee to the Arc de Triomph for some photos and from there on to the Eiffel Tower. Memories that will live with us all forever.

We were all delighted to represent Falkirk Round Table during the challenge and hopefully raise awareness of The Somerville Foundation.

By Phil Lauder, Falkirk Round Tableon behalf of fellow cyclists Chas Masterton,

Jim Snedden, Kevin Gilmour, Mark Northway, Ross Wilson,

Steve Barton and Scott Cunningham.

Auld Alliance Cycle Challenge

Royal Parks Half Marathon 2014 - Sunday 12 October 2014The Royal Parks Foundation Half Marathon is one of the UK’s most exciting events, giving you the opportunity to run through the amazing Royal Parks of London and also take in some of London’s most iconic landmarks! Join thousands of runners on the start line this October and be part of the biggest Royal Parks Foundation Half Marathon field yet.

For more information or to take part in this year’s beautiful run and raise vital funds for The Somerville Foundation visit our website, call Helen on 01473 252007 or email admin@thesf.org.uk.

www.thesf.org.uk16 17

Spot the DifferenceAre you eagle eyed? Can you spy the five differences in our Spring competition?

We have a £25 National Garden gift card up for grabs for one lucky winner to spend on whatever they like in a range of stores. Whether you want to indulge in some new secateurs or some plants for your garden, enter our competition today to be in with a chance of scooping the prize!

To enter, simply identify the five differences between the two seemingly identical pictures. Circle, scan and email to magazine@thesf.org.uk, or send to The Somerville Foundation head office for your chance to win.

The winner will be selected at random from all correct entries received by 1st May 2014. We reserve the right to substitute prizes for those of equal or higher value where necessary.

Good Luck!

Congratulations......to Lorraine Adams, who successfully spotted the skier’s differences from our previous issue. A £25 Post Office One4All gift voucher is on its way to you.

...Happy shopping!

Anna’s StoryI was 24 years old when I gave birth to Amanda. She was premature and had not developed properly. The nurses at Haverfordwest called her a lazy, bad tempered baby, as she wouldn’t feed, they said she was holding her breath; I was to bottle feed her. One night when making her bottle she passed out, my mother threw her into the air to start her breathing again. Amanda appeared quite blue compared to other babies, so I took her to the doctor who examined her, said she had a noisy heart and made a referral.

It took months to see a specialist in Sully Hospital. By this time Amanda was fitting up to 26 times a day. They taught me heart massage and referred her to the University of Wales Hospital. Finally she was diagnosed with Fallot’s Tetralogy. They did a Burlock Shunt and said she may live until age 5; regrettably there was nothing more that they could do.

We lived in Pembrokeshire and no one had heard of her condition. I had two younger sons, my parents had emigrated from Italy so they didn’t understand the language or medical terms, they didn’t drive, and they were not able to accompany me on the four-hour return journey to hospital. Sometimes my brother took us to appointments. We would travel up the night before, usually after he finished work or I would take the train. My husband worked on a farm, never taking time off work. It felt like just me and my daughter fighting the world. Each day I prayed for a miracle, whilst Amanda became worse.

By the age of 7, Amanda attended school but went everywhere in a buggy as she could no longer walk. We were told to prepare for her death, it wouldn’t be long. Just when we thought all hope was lost we were given the chance to try pioneering surgery in England.

The first thing I noticed about Professor James Monro was his eyes. They were so empathetic and so trusting. He was the

leading consultant at Southampton Hospital, specialising in congenital heart disorders. He took time to explain everything in terms I could understand and nothing was too much trouble for him. For the first time ever, he gave me hope for my daughter.

The morning of the operation was awful. I watched a video on having a heart transplant, to show the intensity of open heart surgery and in a way prepare me in case Amanda died. I put the iodine on her body before surgery, and gave her a kiss goodbye.

During the operation I was supported by a lady who took me away from the hospital. At 12pm as we pulled back into the car park, a doctor met us. I remember the compassion as he acknowledged how worried I must be. He said unfortunately there had been complications; Amanda was still in theatre could we come back at 3:30pm?

Amanda had been in surgery for 8 hours when I finally got to see her; she had tubes and wires attached everywhere, Strangely I noticed even her teddy bear had a heart plaster stuck to its chest. Sadly, I was only with her briefly as something was wrong. She was rushed back to theatre haemorrhaging. I remember leaving the unit and going to the hospital church. I was so distressed. I asked the big man upstairs to make his choice quickly, either take Amanda or let her come home with me. I returned to the guest house and asked the landlady if she could take the call when it came in. I felt beaten and couldn’t bear any more bad news.

The call came through – He had done it. Mr James Monro had saved my daughter.

Amanda’s StoryI must have been going to a party, but I was so tired I didn’t think I could go. Mr Monro appeared to be in a Tuxedo but my operation was today. Doctors normally had white coats on. Surely I wasn’t going with him in my pyjamas? I hugged my teddy to me. “John

Bear” I whispered to him, “Maybe, I am having the operation after the party. Or maybe they will be doing my operation quickly then we can go to the party.”

I had already had a Burlock Shunt, and eye surgery, I’d had catheters, angiograms, scans and treatments from the moment I was born. I was used to it but I didn’t like it. I never complained, though I used to have nightmares about tunnels, and I screamed about them.

I was being wheeled down the corridor, this was the scary part, knowing that in a few minutes the mask would go on, and my world would fade away. Before the mask I would panic, terrified I would never see my family again.

Yet, Mr Monro was different. He was my new special doctor, and he was going to fix my heart. I felt safe with him. He didn’t make me walk up the corridors until I felt funny, or tell me off for being sick. He said I could take my teddy with me, and I chose songs to play me to sleep. There would be no masks just a little injection in my arm. He said when it was all over I would be like everyone else. I couldn’t wait to get out of my buggy and walk to school. I longed not to have to stay inside at break, playing house under the tables while teachers talked and friends ran outside. I hated being left out.

The priest had come to say prayers for me. Mum was crying and Dad looked sad too. I didn’t understand, they wanted my heart fixed so why the tears?

Tunnels, getting smaller, crushing me, I can’t breathe. I wake up - I still can’t breathe. There’s an elephant’s trunk on my nose. I can’t sit up there are wires and drips everywhere. Mum is there, a male nurse takes the oxygen mask off me and says hello. “Hello” I say. I look at Mum. Faces. Doctors. They ask how do I feel? Fine I say. “Can I have some milk?” My special doctor says it’s not allowed, but suddenly

...Mr Monro

some appears. I am only permitted a sip, but it’s magic, because I feel amazing. I never went to a party but I had the operation - I have a brand new scar on my chest. And John Bear has a plaster over his heart too. I wonder if I really am fixed. I do feel different, but I am anxious to walk. I don’t stay in intensive care long, it will be winter soon, and I really want to go home and play on my swing.

It’s time for me to leave Southampton. He really did it. Mr Monro fixed my heart! I can walk, run and play. I’m no longer blue, cold or tired, I am normal now. I give him and all the staff a really big hug. I say “Thank you,” but deep down as young as I am, I don’t feel “Thank You” is nearly enough. I’m 40 this year and still Thank You seems not enough.

We were deeply saddened to learn of Mr Monro’s death in August 2013. We found out from a gentleman who was holidaying in St David’s. When he returned home, he kindly sent a clipping of the obituary. Both of us were struck by the Daily Telegraph photo because of his eyes. They looked as intense as

ever, but had also seen so many challenges, and sorrow. We will always love you. Our hero, Mr James Monro.

There are many tributes available online to Mr Monro – notably the BBC England website, the Daily Telegraph and the Southern Daily Echo. If you are interested in his work, much of his research has been published on the British Medical Journal website.

Mr James Monro was appointed in Southampton in 1974 as Consultant Cardiac Surgeon. He developed cardiac surgery in the UK to another level. He pioneered infant ‘corrective’ surgery, most notably the repair of Fallot’s tetralogy and persistent truncus arteriosus. He and his colleagues in Southampton achieved the best results in the country - the ongoing results of which the team see regularly in the ACHD outpatients department.

He was not only a fine surgeon but a gentleman in every sense of the word. He was

never too busy to see a child and their family,

and was always gracious and supportive

of his colleagues. He was involved in many

national issues and enquiries: he became

President of the Society of Cardiothoracic

Surgeons of Great Britain and Ireland, and

subsequently President of the Association

of European Cardiothoracic Surgeons. His

reputation as a man and as a surgeon was

clear for all to see at his memorial service in

Romsey Abbey, where approximately 1000

people paid their respects, including patients,

families and relatives as well as a large

number of colleagues from around Britain

and Europe.

He will be sadly missed by everyone who had

the privilege of meeting him.

Tony Salmon,

Consultant Congenital Cardiologist,

Southampton General Hospital

By Amanda Davies

18 19

Supporting young people and

adults born with a heart condition

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How to contact usHead officeSaracens House25 St Margarets GreenIpswichIP4 2BNTel: 01473 252007Email: admin@thesf.org.uk

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